Hope, Lost

fibromyalgia awareness

fibromyalgia awareness (Photo credit: veganjoy)

I am feeling funky today. Not funky ha ha, funky bad, I get those days from time to time. Fibromyalgia and chronic pain are to blame. There are days when I have a really good attitude about my chronic pain disease, Fibromyalgia and I say things to myself like “it’s not life-threatening” to keep me sane and balanced and aware, even grateful. Then there are nights like tonight where my face crinkles in uneasy frowns and my smile has disappeared as if I have two very different personalities. This “me” is not happy, and this “me” is angry, pissed off and ready to rumble.

Tonight is a night when many of my Fibromyalgia on-line friends/sisters in solidarity, are on-line, I read their blogs, they read mine.  There seems to be a lull in energy for all of us, a low in satisfaction, an overall feeling of just wanting to give up and an off the wall chart on pain levels. We have had enough, all of us. Yes, we know we have the illness, yes we will never get rid of it, yes it hurts and clouds our minds so much that our children look at us as if we have dementia. It’s called Fibro Fog.

I’ve never been overly concerned with my age, 55, but I am disappointed and disgusted in my physical limitations. Between low blood pressure, Hashimoto’s Thyroiditis and Fibromyalgia, I don’t have a lot of energy. Other times, I have balance issues, always I have pain. At some point in the day or night, pain wakes me up in the cramping of my arms, in the battlefield of my legs. My husband passes by me and by accident his soft, cotton shirt touches one of my tender points and I scream out in pain. He didn’t do anything wrong but just the touch of the fabric was excruciatingly painful. It’s not fair and yes, I am whining tonight.

I’m tired and cranky and cranky some more. Oh, p.s. IT’S NOT IN OUR HEADS!

My jaw hurts from TMJ, my stomach hurts from IBS, my hair falls out and I can’t get a good night’s sleep which is imperative to my health. I can’t win, we can’t win. I feel  impatient and eventually I will settle down but now I just want to be angry at how my body has failed me. You know it’s true.

No, I don’t want platitudes, I just want to vent and say that I know it could be much worse but for now, it isn’t exactly like a walk in the park. I have a puppy, she needs to be walked, she needs to run but I can’t run with her. I take her on short walks when I can and sometimes I just throw her a toy, from my lying down position on the couch. It isn’t much but it is something. Still, I feel like a bad puppy mommy.

I had to have a brain/spine MRI because my imbalance was so severe that I fell flat on my face and knees outside with nothing to trip me. I’m seeing my Rheumatologist but I KNOW he doesn’t have the answer. He believes me, he cares, he tries but I know he can only do so much. Part of me wants to throw away the medicine I am taking (Savella) and see how bad it is without it. On the other hand, I’m scared to do that, I’m a little better than I was originally. Just not good enough.

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Buying A Purple Shirt While Eating Jelly Beans

This is a picture i took for the Candy article.

Image via Wikipedia

This is the kind of post you want to read on a Monday afternoon when the clouds are all gray and gloomy and it is the start of a brand new week. The orange-green-red leaves on the trees are swaying and they look like they want to cry. I’m thinking about the future and living somewhere else where the sun stays out all day and you don’t have to wear a thick black jacket.  The only perk today is that our house is clean and it looks pretty. There are no cobwebs that I can see and the wood shines like a Pledge commercial. It smells lemony and the beds are made and the sheets are fresh and I am planning to take a hot bath tonight. It’s against house rules to put your dirty body into a brand new made-up bed with sheets and blankets that beckon you and smile.

It’s our friend Christina’s 16th birthday and she looked so sweet and innocent and happy like a shiny polished Macintosh apple. My son drives her to school and back every day along with his sister seated proudly in the front seat. Christina was wearing the soft beige scarf that my daughter gave her for her birthday. Her arms were packed with brownies and oatmeal cookies and chocolate cake that her school friends made for her birthday celebration. Oh to be young, filled with sweetness, innocence and incomparable joy. I see myself in young Christina, all eager and willing to please, her arms outstretched for a big, warm, hug.

I’m listening to music to quell the anxiety that has been plaguing me for the last week. It starts in the late afternoon and escalates until nighttime; my stomach clenches and my legs ache with unbearable pain. My aches and pains stem from stubborn, bossy, Fibromyalgia and sleep comes as a welcome relief.

I’ve taken down all the photographs of my children when they were very young and replaced them with an up-to-date picture of the two of them grinning, their eyes alive with mischief; my son’s arm casually draped around his sister’s shoulders. I had to beg and plead a lot for that one portrait. While I am extremely proud of my children’s independence I have had a few problems lately adjusting to it.  I can’t forget the moment last year when my son said patiently “Mom, High School is one big lie.” It is a message that has been burned into my brain and I think of it often.  I didn’t believe him then but I do now. Apparently, lies are commonplace but I need to force myself to look deeper, for honor, and not compare my past, unhappy and burdened youth to their present, over-indulged happy lives.

I am booking a massage at the local spa, a gift I received for my birthday, and I am looking forward to it. There, I will not think of the last year, tension pressed up against stress like two sweaty lovers: unemployment and illness together as one.  I will fantasize about traveling, seeing the tulips in Holland, a trip to Israel in the spring, perhaps the countryside of Spain. I will picture my loving husband’s face, his hand in mine, playing the punch buggy game in the car and competing in the “I love you more” contest. I will remember that when I asked him for a phrase, another definition for “empty nest” he threw his head back, howled loudly, with glee and in a snap of a second he shouted: “Freedom.” I love him so much in many ways but I especially love him for giving me that.

Dedicated to Danny

Gray

Tropical Depression One upon being declared

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In my 200th post (ok, I missed it, it’s really 201) I look back at who I was when I began, and who I am now. Many things have changed, many have stayed the same.I ‘ve always blogged about different things: pain, joy, food, celebrities, loss, egg salad, Food Network, chocolate and people. I blog about whatever I want and I don’t hold back; today my life feels gray and dark and tumultous.

The first bog I posted was tentative and scared; the name of my blog itself (hibernationnow)speaks volumes. I was a frightened and sick bear cub that wanted to burrow under blankets and hide, away from people, from symptoms, from pain, from life. I’d had enough of various illnesses and I just couldn’t deal with it anymore. Since writing had  been a passion in high school, I decided to take a chance and try once more, I decided to blog on-line. For me, it was a very bold  first step; I hadn’t written anything substantive for more than 35 years. I started with one post, here I am today. When I don’t write in a while, like now, trouble is brewing.

Having  chronic pain  is not an easy thing to deal with because it in itself is so unforgiving.  I have to consciously say out loud  ” this is not my fault. ” I have also learned from my blogger friends that “pain is pain” and that I can’t compare my pain to others nor should I diminish it. I give this group of women in the chronic pain world a lot of credit, they will hold you when you need it and tell you the truth when you deserve it. From them I learned that my pain is no greater or no lesser than anyone else’s pain. I hurt, therefore I am.  I am now owning my pain.  These women in the chronic pain community have given me support, information and emotional good cheer. We keep each other afloat and when one of us is down, the others rally around with gentle hugs. If the world could be run by this group there would be no war.

In the past year there’s been hospitalization,  various autoimmune drugs (and their evil side effects)  asthma, broken ankles, fibromyalgia and a thyroid with the beat of a listless, dull, old  gray-blue pidgeon. I was so nervous about my last routine round of blood tests that I had a full-fledged anxiety attack and needed to take a Xanax  but alas I was too far gone and it didn’t help.

For the past three or four days I’ve had excruciating pain in the small of my back and in my legs. Sitting, standing, sleeping or walking, this is a whole new arena of pain that I have never experienced. What is wrong with me? Why is this happening? What’s the matter with me?  In this tumbled world of chronic illness I don’t know where this particular pain is from. Is it a side effect from the medicine? Is it a pinched nerve? Is it something new and horrible?  Inside, you groan, “oh no, not again….” and still it continues. I am feeling depressed and ill at ease; I am now a stranger in my body and also, my mind.

My husband of 22 years has been unemployed for more than a year now. I’ve handled it well until recently but I think I am at a breaking point. We have a son who is a senior in high school and a daughter who is a junior in high school. The stakes are high at the moment, there seems to be a new challenge every day. There is chaos on top of chaos.  I’m trying hard to hold on but I can feel myself slipping. Perhaps my new pain is telling me to breathe, to slow down, to let the stress go. I’m trying.

I am in the eye of the storm and the world is whirling around me and I am stuck in the middle, unable to move, wanting to scream out but being incapable of screaming. There are so many things to do and so many emotions that it feels overwhelming.    I am stuck in pain, in conflict, in existence; I need to breathe, to find time to breathe and sit with music as my therapy and Advil by my side. Soon, I will ask for help.